Lilan Gets Dirndly

We’re Here. We’re Sick. We’re Dirndly. We’ll F*** You Up.

Allow me to dedicate ME Awareness this year to Germany, where we don’t have ME at all. No! We have “tiredness”, caused by lack of activity and cured by salsa dancing or a hearty hike in the Alps! Here’s what I have to say about that.

Fact: ME is Myalgic Encephalomyelitis, a debilitating, multi-systemic, neuro-immune disease. The cause of ME remains unestablished. It is often incorrectly called Chronic Fatigue Syndrome.

Fact: Life expectancy of ME sufferers is 20 years shorter than normal.

Fact: Most Germans don’t wear Dirndls.

Oh. Have I not made myself clear?

Fact: There are 17 million people with ME on the planet. The number is ever growing.

Fact: Germany has 300K people with ME, likely a gross underestimate, as the illness is oft misdiagnosed as depression, burn out, or the ever-popular “soul sick.”

Fact: A single immunologist in Berlin researches viruses associated with ME. Her assistant draws 30 vials of your blood, then sends you on your way. The state allocates her no money to treat you. She sends you to no one who can.

Let’s try it again. Got it, deutsche Behörden?

Fact: ME impairs the heart, brain, gut, mitochondria, central and autonomic nervous systems, and endocrine and immune systems. Even in moderate cases, no physiological or cognitive functionality goes unaffected.

Fact: No big pharma company has stepped forward to perform studies on any ME drug. Nor has the FDA ever approved a medication for ME.

While we’re at it, why not un bras d’honneur for the entire EU?

Fact: The “psychosocial model” of ME was spawned in the UK. This myth has been sold to the media and the masses for three decades.

Fact: Europe laps this shit up.

Fact: If a state denies the gravity and biomedical nature of an illness, that state need not pay for the medications and lifelong care its afflicted citizens require.

Fact: German and Belgian state insurance mandate that people with ME go to psychosomatic clinics, where staff have no training or knowledge of ME and patients are subjected to mental and physical activity that severely worsens them.

Fact: The Danish Board of Health doesn’t recognize the diagnosis of ME. 23-year-old Karina was bedbound and too weak to talk from ME. She was forcibly removed from her parent’s home and locked in a pysch ward, where she was held in captivity for three years.

Voila! That’s for you too, CDC, NIH & NIAID

Fact: There are one million People with ME in the US. Their suffering has been likened to AIDS patients on their deathbeds. Yet ME gets less funding than hay fever.

Fact: For decades, the Centers for Disease Control has disseminated faulty ME diagnostic criteria and insisted ME has no biomarkers.

Theory: Were the CDC to refrain from said bullshit, my New York doctors might well have seen my symptoms for what they were, and I’d not be lying here today.

Fact: Patients diagnosed and properly treated for ME within the first five years of illness have a chance of recovery. I have been sick over nine years.

Fact: Of late, I have been treated by a US-based specialist, nutritionist, and pharmacologist. I have had access to medications, supplements, and hormones most German People with ME do not. My 10 months on the anti-viral drug Valcyte resulted in marked physical and cognitive improvement. Its impact will fade over time.

What? Me? Angry? Nevah!

Update: These photos were taken five years ago. The Valcyte wore off in six months. It resulted in acute gut dysbiosis. I tolerate three foods, no supplements. A relapse left me too housebound to visit a doctor and more cognitively impaired than ever. All-around, a regrettable experiment.

Opinion: I sure as hell don’t look like this anymore.

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